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Gallbladder Cancer Stage 4

gwc345

Posts: 2
Joined: Apr 2009

Apr 15, 2009 - 9:00 am

Hi,

A week ago my mom was diagnosed with gallbladder cancer stage 4. I am looking for survivors. Anyone who knows a survivor. I know the statistics, the doctor has already given us a time frame, and the oncologist has told us to go for "quality of life".

If there are any survivors or if you are having successful treatments I would like to hear from you. What have/are you doing right? Where did/are you getting treatment?

hello... Im currently 21 and my mother 51... my mom has been dealing with gallbladder cancer for the past three years .. about a year and three months ago the doctor gave her 4 months to live but she had made until now... well.. after a long battle now shes on the edge to die in any second... I know you are looking for survivors which is the same exact thing I was doing at this time last year but Ive written a blog with all my feelings.... what has gone on and how Ive felt for the past 3 years..... In there you can see my emotions of roller coaster and being in denial to finally coming to an acceptance... even though is still the hardest experience of my life..I seriously spelt my heart out in the LONG blog and maybe someone can relate and learn from my mistakes of at times not being by mothers side and also the shock of having to her in the state that she is in now.. maybe and hopefully this blog can help someone relate and be able to deal with such a traumatic and painful experience... here is the page to my blog of my blog… http://www.randomfactspage.com/ …. It first started as a random website that I wanted to post weird stuff on my free tome but I felt the need to share my experience so it has become more of an emotional page.... hope it helps someone.. heres the link again. http://www.randomfactspage.com/ .... share your thoughts... TRUST ME im in NEED of some support as well..... also the blog december 2012 TRULY speaks my heart.

Welcome to our boards. I'm so sorry that this has happened to your mother and you. She is young and my first suggestion to you is for her to find another doctor that has had experience will GBC. Get second, third and even fourth opinions. It is so rare and most doctors have never seen a case of it. Most doctors’ suggest palliative care and go for quality of life instead of quantity. It is an aggressive cancer that needs to be treated aggressively. It is your mother's choice whether she wants to fight like hell to live or just give up.

There are newer discussions on the Gallbladder Cancer - 2013 thread that you might want to read. Post any questions that you might have there and we will try to help to the best of our abilities. Many of us where told the same thing but yet we are still here and discussing our disease.

My mother has been diagnosed with gallbladder cancer tumour stage 4 .I came to know about the cow urine therapy and ayurvedic medicines , and another treatment called as dendritic cell therapy may cure the disease , i want to know whether these therapy will be helpful in curing the cancer ? plz tell about the tretment details for curing my mother.

I feel like I've found a good place to share, send love and ask for help

My husband was diagnosed seven weeks ago with Stage 4, which has moved from his gallbladder to his liver, and has grown 50% again in size since the last CT a month ago. The tumor is pressing down on a large group of blood vessels in the liver, causing difficulty with digestion and circulation. He has lost around 16 kilos in seven weeks. HIs jaundice was disappearing but in the last week his bilirubin level has started to climb again. It's a frightening and upsetting time. Surgery has been ruled out, and we go for a meeting later this week to find out if they will still offer chemo (entirely dependent, I think, on how his bilirubin is doing), or just give us a time limit on his life. I wanted to ask if anyone else had a similar diagnosis and if so, what drugs or treatment combination proved effective. I know that everyone responds differently to treatments, but I at least want to go into this meeting with questions to ask!

I know how much energy and empathy it takes to invest in soneone else's situation when your own is so overwhelming but any input will be very gratefully received!

I'm Lily and I'm a GBC Stage 4 Seven Year Survivor. Yes, you have come to a good place to share your journey with us. This is the original discussion thread that was started over 5 years ago. Every year I create a new thread, because the bigger the thread gets the more difficult it is to respond and takes too long to load. If you don't mind if you could post to the Gallbladder Cancer - 2013 - (Any Stage) just cut and paste and we will be happy to share everything to the best of our abilities. This disease has gotten more attention these last couple of years and there are people who are going through what your husband is or have already completed treatment.

This is a very aggressive disease and needs to be treated aggressively. You are both in shock right now and everything that you read is outdated at best. I too was told no to surgery in the beginning and eventually after 11 months of chemo I was able to have surgery. No just means not now. I couldn't have radiation as my liver was compromised. I was given 2 weeks, 2 months and on the outside 2 years. Boy, lots of doctor's were wrong with that prognosis. Yes, we have all had the similar diagnosis and different people have responded differently to the chemo cocktails. Gemzar seems to be a common thread, along with Cisplatin, Carboplatin, Oxiplatin, and/or 5 FU's.

I know for most of us that post on these boards need to feel connected with others that are facing this disease. The medical community tends to view the situation as hopeless but it doesn't have to be. Talk to us and we will try to help you and your husband.

Hi dear freandmy name in mohammad from Iran. sorry my english not good, sorryYou are my source of hope and life, my father have gall bladder cancer stage 4, we know almost 1 monthago, surgery not good because his dr told me the cancer metastas tolymph node (N2) but organs ( Liver and pancrase) is clear and nometastas to there .(T2 N2 M0) the surgery consist of removal gall bladder without lobectomy of liver or resect of lymp nodes, Doctors told me prognosis is so bad nearly 6 month and I am in shock and upset.however we want start chemotheaphy but the dr told us this treatmentdont better survival and I hesitate that start chemotheraphy or not.please help me for this subject also My brother lives in Germany and We try to go to this country fortreatment, in my country drug that use for this deasease is GEMZAR,please help and direct me to make a right decition

Just saw your posting here and even though we have talked via email, please cut and paste your father's story to the discussion thread Gallbladder Cancer - 2013 (Any Stage). It is the most current thread and others would like to hear your story.

I am from Italy and my mum was been diagnosed with a gallbladder cancer stage 4 with a carcinoma in the peritoneum. Here in Italy I wrote to the best Doctors, but all of them told me that it is impossible to save my mum, impossible to do surgery. I don't know if wherever in the world there is at least one possibility of saving her, that's why I am asking for your help. My mother did palliative chemio until now, with Gemzar, but now her liver is suffering and doctors don't think she will be able to continue with chemio.

I read here that it was possible to survive for you and I hope my mum will survive too.

Please, give me Doctors contact, at least I will try to contact them and ask for help.

Hi I am stepin my mother is diagnosed gull bladder cancer stage IV two days back and doctor was telling surgery is not possible and therd is no treatment for this.pl help me out the CT scan report is limd this CHOLELITHIASIS WITH MASS IN GB FUNDUS REGION.

Hi I am stepin my mother is diagnosed gull bladder cancer stage IV two days back and doctor is telling surgery is not possible and there is no treatment for this.pl help me out the CT scan report is like this CHOLELITHIASIS WITH MASS IN GB FUNDUS REGION.

Hello. Im not a Dr, and dont understand probably what the diagnose is.

However, what i found out. Get the right chemo who can shrink the tumors, also in addition get immunotherapy. With this the goal is that the tumor is small enough to operate or to do a transplantation.

Hi I am stepin my mother is diagnosed gull bladder cancer stage IV two days back and doctor is telling surgery is not possible and there is no treatment for this.pl help me out the CT scan report is like this CHOLELITHIASIS WITH MASS IN GB FUNDUS REGION.

IRREGULAR MODERATELY ENHANCING HYPODENSE SOL IN RIGHT LOBE OF LIVER CLOSE TO GB FUNDUS ( ?ADJACENT INFILTERATION OF GB FUNDUS MASS/?SATELLITE METASTASIS) pl share ur experience with this report I am waiting for ur suggestions for my mothers further treatment plan.pl suggest me a doctor in India who can treat my mother.

Just like all on this forum I am also affected by this dreadful disease as my mother was diagnosed with metastatic GBC in sep 2012 . initially we were in denial and doubted the diagnosis as she was not having any trouble of any sort physically. It all started in May 2013 when she suffered from obstructive jaundice and lost hell lot of weight we then ran to the oncologist and it was confirmed that it has been caused by this disease only. We then submitted ourselves to the oncologist and followed whatever he adviced. Her ERCP and metal stenting was done in July 13 and soon she recovered from jaundice. Later in Oct we started off with First line of Chemo Gemcitabine+ Cisplatin ( 1st day then 7th day and 15 days gap after that). She underwend 6 cycles ( 12 seatings) over next 3 months. Results were beyond everyone's expectations as the oncologist had told me earlier that my mother had 3-4 months to live even after chemotherapy. The CT scan after chemo showed that the primary and metastatic lesion shrank as less as to 4cmx4cm from a massive 13cmx12cm and the best part was that she did not suffer from a single side effect whatsoever and had a good appetite and healthy and active routine. But as the fate must have it we again did a CT scan in Oct 14 to check the state and to our surprise the disease had bounced back and the lesion again increased up to their original size of 12x13 cm in 3 months. The symptoms started coming back as she lost weight again, the gastric problems and pain in stomach. We again resorted to the advice of the oncologist and opted for Second line of chemo ( Capcitabine( oral (2500 mg everyday ))+ Oxaliplatin( I V 1st day and 7th day then a gap of 15 days) . We have undergone 4 seatings and the CT scan has again shown some good signs as the primary and metastatic lesions have again come down to 4cmx5cm but this time she suffered from Diarrhea as the side effect of the drugs which has further weakened her. She is still recovering from the same and preparing herself to undergo the next chemo cycle. She is a warrior at heart with no worries or regrets whatsoever which probably has helped her the most to fight the biggest battle of all ours life.

Now comes the part where I will request you people to provide your advice as the tumor has now come down to a level where probably it can be removed surgically but the oncologist has told us that the metastatic lesions can not be removed surgically hence the disease is inoperable. We are stuck

In a dead end where after 2 cycles I'll have no options left but to watch my mother suffer through the disease . I am also looking for any effective and proven Alternative treatments which I can opt for .

Sorry I cannot offer much specfic advice. My mother was diagnosed with gbc back in Jan 2014. We have completed the first line treatment and she is doing well so far. Have you asked for a 2nd opinion regarding an operation? Many sugeons will not operate as once the disease is metastatic there is a high probably that the cancer has spread to other area, hence the additional stress of an op will not be in the patient's interest.

Hope your mom is doing fine..... can you tell about latest updates.... and for resection have you met dr shrikhande in tata memorial bombay or dr adarsh chaudhary in medanta.... my mom is on chemo right now .... she also has ca gb with liver mets..... i have talked to both the surgeons in person they have positive attitide toward this.....

Hope your mom is doing fine..... can you tell about latest updates.... and for resection have you met dr shrikhande in tata memorial bombay or dr adarsh chaudhary in medanta.... my mom is on chemo right now .... she also has ca gb with liver mets..... i have talked to both the surgeons in person they have positive attitide toward this.....

hey I'm from Sweden and last year we received stated that my mother has gallbladder cancer that is spread to the peritoneum. someone who has cancer that is spread to the peritoneum? which chemotherapy do you take? have you received side effekts like numbness and tingling in hands and feet?

Hi Rebecca, This was also my mum's initial diagnosis but we later found out that there was no spread to the peritoneum. The chemo my mum was given was GemCis (Gemcitibine and Cisplatin) which is the standard 1st line treatment at the moment.

Mum did get have some side effects but nothing too severe and she was able to see out the course relatively OK. She had the following:

Hair loss (mild, thinning)

Mood changes/short term memory blips (mild, and this was probably the steroids)

Constipation (this was treated with laxative prescribed by the hospital)

She did not suffer from the tiredness much at all, she seemed to have fairly good energy levels throughout. The tingling, as I understand can be a sign of something more serious called peripheral neuropathy which needs to be checked by a doctor.

Hello. Sorry - didn't know how to start a new comment, so I am replying to your message since yours appears to be the most recent post. I was diagnosed with stage 4 gallbladder cancer this week. Oncologist said Gemzar and Cisplatin were 2 chemo drugs that might help. Radiation is not

an option. He said I don't have to decide right away about chemo. I don't know whether that's good or not. I'm 69 and in pretty good health. Have had pelvic pain and back pain for several years. Finally started trying to find some answers this year. Went to physical therapy not real helpful. Dr. ordered an ultrasound and that showed gallstones so Dr thought maybe removing the gallbladder might help the pain. A month ago they tried to take out the gallbladder and instead found a mass growing on it and closed me back up. Had CT scan and it showed the mass so a surgeon had scheduled surgery this month. I went to Mayo Clinic and they did another Ct scan and saw a node which they biopsied and it is cancerous. They said surgery is not an option. So here I am not knowing whether I should try the chemo. Any feedback would be appreciated.

Yes, try the chemo. It will buy you time and the Gemzar plus Cisplatin isn't that bad. I'd also recommend genetic testing to see if you have amplified HER2, which they have newly discovered in many GDC cases. If you do, Herceptin may be added. My friend did this testing and indeed has the amplicication so went on Herceptim plus Abraxane after the Gemzar+Cisplatin quit working and has kept her alive. She went through Perthera for the testing. You'll need a biospy but that isn't a big deal. Don't wait - GBC moves quickly.

All the best. GBC is a terrible disease and on the rise with no known cause.

Mum diagnosed with GBC Stage 4 in Dec 15. GB removed and stent put into bile duct. Initially told it had spread to liver, bile duct and lymph nodes. CT scan done last month and it's showing no visible cancer. Docs cannot given any answers re the initial diagnosis that it was on other organs and now none visible. Nearly 4 months later and maybe start mum on chemo next week. She is 75yrs old and also has high blood pressure, diabetes, and rhumy arthritis. She has coped with both the GB and insertion of stent well and is back to health prior diagnosis. Oncologist suggested Genzar + Cisplatin. They are definitely against giving mum chemo as they do not think she will be able to tolerate it, hence the delay in starting it. They are planning to use cycle of 1 influsion each week for 2 weeks and the 2 weeks off = 1 cycle. Total of 6 cycles. So she will be having this treatment for next 6 months. Oncologist is not very easy person to deal with and have become increasingly difficult because of our insistence on chemo. Want to keep them on side as mum needs chemo and any other potential treatments. Already tried going to PALS and this has resulted in some aggravation in their attitudes and silently labelling us as 'trouble makers' and mum getting worried if we continue to use PALS so asked me not to until treatment is complete.

I write on all forums about this treatment, but looks like doctors are talking everyone out of using it. If you want to save yourself or your relatives from this disease try it. Modern chemotherapy does not work for gallbladder cancer stage 4. It can be used in i itial stage for reduction of the sizeof thetumor to assist surgery, Though, I wouldn't use it at all. Remember, if only one cancer cell is left alive in tbe body, weakened by chemotherpy, cancer will grow back very quickly. I am a doctor and a surgeon, who had this disease and used immunotherapy 3 years ago.

It is called CTL, or ACTL . Cytotocsic lymphocytes. It is available in the USA, China and now in Thailand.Search on internet yourself for ACTL cancer. I am from Australia. Our surgeons in Sydney know about me, ask them.

My mom diagnosed with ca gall bladder with mets in liver both lobes and rt cervical lymph nodes . I m in delhi ... my mom is on gem ox has completed her first cycle of chemo ..... i am a doctor myself .... ppl in india have nihilistic approach .... can u plz guide me towards the immune therapy in detail..... my mom is just 55 years old.... and was completely asymptomatic till 15 th o Aug 2015 after which she developed rt upper abdomen uneasiness for which we had an usg and ct done and it came out to b unresectable ca Gb..... then on sep 4 she developed jaundice for which PTBD was done at aiims new delhi.... now took 1a 1b and 1c cycle of gem ox.... plz guide me for the therapy u mentioned

ACTL, DC-CIK (DENDRIC CELLS) AND THEIR MODIFICATIONS are available in China, India and Thailand. India has only DC treatment. Check this hospital for example http://www.asiancancer.com/technology-equipment/2619.html.

I am not promoting any provider, you can chose yourself. There are few of them.

Life is difficult and directionless ..... dont knw y this happened..... my mom was so active , loving and caring.... life was truly blessed till 30 aug 2015 ....day when my mom was first diagnosed. ...... things are difficult now. .... i don't feel like walking this journey without my mom.... but i have a younger sister who is 22 years old , father 56 year and my son 2 year old..... dont know where life will take nxt..... i have left my job in delhi .... have shifted to a small village so that idea of me being a doctor and inability to save maa doesn't haunt me . Sometimes god also makes a mostake and this time he did

My father aged 56 years old is suffering a gall bladder cancer stage 4 which has spread in lot of places including region near around neck, a bone in back, liver, small intestine. We have got to know about the staging and cancer within a week only. I really wanted to know that apart from regular chemo what other things you incorporated in your treatment, medicines, exercises and how can we get this disease out of his body completely. Since timeframe given by doctor is no more than a year. Kindly and please help me out with something potent and positive. We are based out of India and treatment is going in Medanta medicity. Kindly suggest something. Please. It would be really great if you could mail me any helping advise on my below email ID or on my contact number or of I can get in touch with you personally.

I am from Hyderabad, India. My uncle who is 58 years old was diagnosed with Gallbladder cancer Advance stage in February 2017 and was given chemo for 3 times and his treatment included

Summary of Treatment:

INJ ZOLDONAT 4MG IV

TAB CAPECITABINE 500 MG 2-2X14DAYS

Case Discussion: He is diagnosed as carcinoma gallbladder with bone mets. Already given palliative RT to bone and brain.

and after that he was diagnosed with Jaundice with bilirubin count 8.5. Now bilirubin count increased to15. Metal stent was placed on may 25 2017. He is getting weak and has fever frequently. Now his bilirubin count is reduced to 3.4 after stent placement and at same time we have observed that his CBC is 6.5. When he was diagnosed with cancer Complete blood count showed 12 and now it is reduced to 6.5. He is very weak and is bed-ridden and was unable to walk. he can only take liquids. For one week he has loose stool atleast 5 times a day and it stopped now after taking some medicine. Blood transfusion is done on 21 june 2017. We also tried some herbal medices. Our oncologist suggested that if we are ok he can continue with Chemo, but we are not sure whether my uncle will be able to take it. I wanted to know if there are any one who experienced the same and was able to survive. Are there any other alternative ways. We still have hope and wanted to try every possibility. Please help.

hi my name is candice, my mom brandy 43 a mother of 7 we are all in are 20s and she has a 1 and 3 year old she was recently diagnosed with stage 4 gallbladder cancer this past 2016 Christmas. Probably the worst Christmas of are lives, but still happy where able to have are mother here. She was put on chemo witch seemed to be working but her lasted MRI results indicated that she had 11 new tumors on her liver and surgery wasn't a option. This is very hard on us but mostly for are little brother and sister they don't understand why my mom is in and out of the hospital this is devastating to all of us. The doctors are not giving us much hope. She is at kaisaer right now me and my siblings where able to get her better insurance so she can seek the best medical help we just don't know where to start if anyone can be help that would be wonderful thank you!

My dad was recently diagnosed with stage 4 gall bladder cancer that has spread to bones in his back and lymph nodes in his chest and lungs. We've been told by his oncologist that radiaton and surgery are not options, due to the cancer having spread. Chemotherapy is the only suggested treatment option with the use of Cisplatin and Gemcitabine for a life extension expectancy of 6-9 months. My dad is 78 years old and is in good health and exhibits no symptons to date. Are there any survivors with a similiar diagnosis that can offer some direction or insights on treatments?

Sorry for the late reply, but I work full timeand rarely go to this forum now.

I was diagnosed with stage 4 in December 2012. I only had gallbladder removed. Refused liver resection and chemotherapy. Spent 3 months in China having Immunotherapy, called ACTL. You can check this website http://cellsbay.com/cancer-treatment/

in 3 months all liver metastasis disappeared. I work full time for 15 months now. Strongly recommend this treatment, as it is easy to tolerate and it has no side effects.Gives good quality of life.

She got gallbladder cancer stage 4 . Both lobes of liver are effected. She had her 1st chemo ( cysplatin and gemcitabin) . I just wanted to know how much time she have if chemo didnt help... And also if anyone tht have been cured please let me know what type of chemo has been used.. I feel too hopeless:( . Hoping for an good answer. I m so scared

I'm so sorry about your wife, there are no words for this fear for our loved ones. I also came here looking for hope and information (for my dad). I've learned a lot since this all started for us in March. One thing I've learned is that every situation is so specific to the individual. Gem/Cis seems to be the standard chemo they start with now for this diagnosis. I'll share with you some of what I shared previously on this site in case it helps at all:

My beloved, athletic, still-young father got a shocking stage 4 Gallbladder Cancer diagnosis in March. He began chemotherapy at the end of March with gemcitabine and cisplatin. Shrinkage is possible on this chemotherapy regimen. I have read about a few GBC cases in which chemotherapy (sometimes a different regimen) reduced tumors enough to render the patient operable, resulting in NED (no evidence of disease). The individuality makes it hard to tell if what works for one person will work the same for another. But it gives me hope that it is possible.

These discussion boards don't seem very active for GBC. I check in every so often to see if there's any new advice - and I want to support everyone else dealing with this, with whatever we have learned. I'll share some of the recommendation we got in case they are of help: one was to go to one of the prominent centers where they see more cases of rare cancers like GBC, such as MD Anderson, Memorial Sloan Kettering, Dana Farber...

We were also urged to send the tumor tissue for genetic sequencing. (At Memorial-Sloan they do the MSK-IMPACT test, the various centers probably each have their own - it can also be sent to Foundation One but insurance did not cover our test there.) If the genetic test comes back with targetable mutations, perhaps you will be able to do targeted therapy. If your wife has high microsatellite instability or tumor mutation burden, perhaps she will be a good candidate for checkpoint inhibitor immunotherapy.

MSK has an integrative medicine center where they recommended probiotics, some supplements specific to my dad, and acupuncture/de-stressing. They also emphasized a vegetable-based diet and exercise, both of which seem to be helping my dad get through his chemo well. It might be helpful to ask wherever you go if they have an integrative doctor you can see.

I have to second LiliTM's suggestions about genetic profiling and immunotherapy.
Given that many early-onset cancers are hereditary, and KRAS and EGFR are reported in high-incidence in a North Indian study, targeted therapies can be a logical second line of treatment for your wife. If her family and demographic information indicate, I would also talk to the oncologist about a genetic counseling.
As for the relevant clinical trials, NCI-MATCH is a good place to start:
https://clinicaltrials.gov/ct2/show/NCT02465060.
MJC

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